Hello all. I've struggled with a health condition for over a year now and am having trouble with a diagnostic. I am 33 and prior to the attacks was fit and healthy. I have been in countless ambulances due to the severity however after further tests in hospital always get the all clear. The issue is the attack only ever lasts for 30 minutes and sods law, after a stress test, heart monitor and xrays I never had any symptoms.
Symptoms.
I always feel it coming on and feel extremely weak, my chest (It feels like my heart) slowly starts to tighten at which point I put myself in the recovery position and wait. The pain slowly increases feeling very heavy, at which point both of my arms begin to feel very painful and my wrists become unbearably painful. Depending on the severity, on a few occasions I violently vomit. At this point I am to weak to talk or move, i'm soaked in cold sweat and on every occasion turn blue. Although on every occasion I get hit with dizziness, on only 2 occasions have I lost consciousness when I havnt taken myself to the ground. I then spend 15-30 minutes on what feels like a fight to stay alive before it passes completly and I'm out for a day or two feeling exhausted.
*Causes
Directly after exercise, it can be 5-10 minutes and I'm currently banned from the gym. I tried swimming but unfortunatly had another attack so had to stop.
More recently*
Twice directly after a shower and what has completely made me freak out is twice after puting on cologne.
Has anyone ever seen or heard of these symptoms before with a niche diagnostic?
*Edit
I've done a round of diagnostic without any joy, I'm specifically hoping someone's had or seen these symptoms before and can help.
*Edit
Thank you for your suggestions but I'm specifically looking for anyone who's had these specific symptoms and been diagnosed. I'm continuing with the cardiology department.
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Randomperson89
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Your symptoms sound very unpredictable and are obviously impacting on your quality of life
In my opinion your GP needs to refer you to a Cardiologist for further testing, it may be helpful if a friend or partner could take a photograph of when you turn blue to show your GP. . Have you taken your blood pressure during an attack as a sharp drop in blood pressure or fast rise in heart rate can cause some of these symptoms?Also a simple SP02 finger monitor can show your heart rate and blood oxygen levels and you could keep a record of these to show your GP/ Cardiologist. I hope you get some answers.
It's all been done I honestly was hoping to find someone who's been through it or knows someone else with similar symptoms and a diagnostic.
On the majority of the ambulance call outs they noted my blue colour and drop in blood pressure in the reports, they usually hang around untill my blood pressure returns to normal on the occasions it has been low.
So, I'm assuming it's the drop in blood pressure which leads to the blackouts but could be completely wrong. It could be 1 of the other 27483974 reasons. I did the idiot thing of googling it. So, I'm literally waiting for someone to say, yo, I've got that, or, get a solid diagnostic.
I'm basically hoping it's a pill or an inhaler and I'm back on my bloody merry way. The sad thing about the majority of these answers is the same thing I dredded about the stress test. "You've got to have another attack"
2023 may be gone but 2024 will be my year.
Thanks for the advice.
The problem with being repeatedly taken to hospital as an emergency is that their role and intention is to patch you up and send you home. Anyone who gets serious investigation from that route is very lucky. Your GP is really neglecting their duty of care towards you. They should be referring you to.the appropriate specialists. A cardiologist definitely. Also your symptoms sound very like those of a friend of mine who is epileptic and maybe that should be invedtigated too. It isn't right that you should be suffering these frightening attacks. Kick your GP into touch and insist that you see somebody who knowd what they are talking about. I'm afraid that we do have to be very pro active in our own interests. Good luck, I do hope that you get the right help.
I completely agree, after the first few hospital visits I declined to be taken to the hospital by the ambulance crew because I realised it was a waste of everyone's time since I always recovered.
However, without a diagnostic I still have no idea what it is and obviously worry about the condition deteriorating, hence the ambulance call outs.
I did complete an entire cycle with the cardiology department inclusive of a 24 hour heart monitor, however no attack took place in the 24 hours, a chest xray, nothing found, a stress test, sods law no attack and I was told no irregularities, and a ct scan again nothing found and I was discharged.
After the 2 recent attacks I've been back to the gp and they have re-opened the case with the cardiology department, also the neurology department however, after an initial consultation with the neurology department they decided it was not of any relevance and discharged me.
The gp has been great and always followed up with the relevant departments. As frustrating as it is, there is a backlog from the coronavirus. No-ones fault, everything just takes a very long time at the moment.
The bigger frustration for me, is I'm no closer to knowing what it is and basically paralysed from continuing with my life.
I've thrown this post up in hopes someone's been through it and had a diagnostic.
Thanks for the advice!
2 friends of mine had 6 month monitors inserted when 24 hour tapes showed nothing. I do hope that your GP keeps pushing to get you a diagnosis. Maybe a different hospital with more specialised cardiac and neurology departments, such as a large teaching hospital.
As knitter says, an oximeter is useful, mine is by Biosync about £19 from amazon & it can be attached to a neck cord to carry around down one's shirt at dodgy times. I also invested in an Omron Blood Pressure monitor (mainly because my gp practice is appalling). You could monitor you BP?
I'm not remotely medically qualified however, I'd like to mention a friend of mine about 49 was having weird episodes of collapsing, passing out, ambulances to A&E & also the vomiting. A lot of the time she was fine, a busy working mum of 3 boys but these episodes were scary. GP wasn't too helpful when she went to explain so she took herself to a private GP who suggested it was Vestibular Migraine. Not a condition many have heard of - she never had headaches hence I suppose her gp didn't think of it . Anyway, just a thought
Good morning my daughter had a similar experience and was diagnosed with something called Vasovagel Syncope which involves weakness,fainting light-headed and is Brought on by stress I.e gym exercise, sudden movements etc had all heart checks and given all clear but it can be any kind of stress on her body and was told to up her salt intake .not saying that is what you may have as I am not medically trained but symptoms sound familiar.
Peegee has suggested something I also thought of while reading your symptoms, a more unusual form of migraine. That should have been picked up by by the Neurology Department. So do go back, and ask for more investigations.
That sounds terrifying. I am sorry to say I have never heard of such attacks before and sadly cannot give you any help in this respect. I wish you all the very best and hope this can be solved for you very very quickly.
Have any tests ruled out an allergic reaction? It might be worth them checking your mast cell trypase levels if you have another ‘attack’ to rule out anaphylaxis? Have you had any hives, redness,swelling or throat tightness during the attacks? My son has multiple food allergies and they can have similar symptoms. Hope they find a cause soon very worrying for you
Sounds bad for u.how often do they happen?if it's only ever after exercise,perhaps BP is low as body fluid drops when sweat. It's worth increasing yr daily fluids and always lot more after exercise.hope it helps.has Anyone checked yr blood glucose levels - symptoms sound similar to a hypo = low levels.
I have MCS (Multiple Chemical Sensitivity) aswell as allergies and I have heard of other people with MCS suffering such sudden attacks after coming into contact with chemicals they react to. It can be hard to get a diagnosis. I would mention the episode with the cologne to your GP and ask if they can help. Some doctors recognise it in the UK, but not all.
Keep a record of when it happens and any changes in your environment. I have to avoid all perfumes, scents and some chemicals such as gloss paints, and turpentine - avoid newly decorated rooms or ones where chemicals have been used. Some private doctors can help. It is better recognised in the US and Canada.
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